I was diagnosed a few weeks ago with invasive ductal breast cancer in 3 areas of right breast and a spot in lymph gland; grade 2, hormone receptive, HER2neg. Due to the focal areas, they want to perform a mastectomy but I am only willing to consider with immediate reconstruction and the plastic surgeons are refusing due to my hypertension, even if this was under control with medication (which it is) they say due to length and nature of the operation and the risk of stroke or other complications with blood vessels. They have said I can’t have the reconstruction even if delayed, as the hypertension remains an issue.
I have told them I will not have the mastectomy without the immediate reconstruction and they have put me on letrozole to buy time; they also raised my age as a red flag (66) and also I have to lose 4 kg (which I have agreed to) but the hypertension is the key obstacle.
I wonder if anyone else has (or has relations who have) refused any surgery and how this was handled by the hospital. I am trying to seek a second opinion in another region but may be difficult. They have warned me of the consequences and I worry about the symptoms appearing and the cancer taking hold; wondering about any other experiences? My next appointment is later this month and they will just check my weight and my progress on the letrozole with an ultra sound set up a few weeks later.
Many women on this forum have had to face mastectomy without the option of reconstruction for different reasons. Last year the stark choice for me was a reasonably quick surgery appointment in my local hospital, or a long and indeterminate wait at a bigger centre, where reconstruction was slowly becoming available post Covid. It was tough at the time, but you do get used to either being flat, or wearing a prosthesis, as unlikely as that might seem to you right now. I’d been sure I would have reconstruction at a later date, but now I just want to get to the other side of chemo, further axillary surgery and radiotherapy and be able to enjoy my family and friends and long awaited retirement. (I’m 62)
I don’t think your doctors are being deliberately obstructive and ignoring your wishes. They obviously feel it would be professionally negligent to risk either serious and permanent disability, or even death, by carrying out such a long and complex procedure.
Initial scans and biopsies for breast cancer are not always accurate. My cancer has turned out to be more active than was originally thought, and I can only say that when facing arduous treatment and a potentially shorter life, losing a breast doesn’t seem that bad. Please consider just having that operation and give yourself the best chance you can.
It’s worth a call to the BCN Nurses, who are excellent sounding boards, and they will also be able to put you in touch with others who have been in a similar situation.
I realise this might not be the sort of reply you were hoping for, but all anyone can do is give their own lived experience. I wish you well with whatever you decide. XX
Hi @JacquelineW - I too can understand your disappointment at not being able to have an immed recon. Happened with my first mastectomy (or didn’t) with full node clearance 2006, just due to a blip in communication. Surgeon thought I’d wanted a self tissue recon (which I couldn’t have due to certain reasons) when I only ever wanted an implant. I had a second diagnosis with other breast, not quite a year later, 2007. I stress not due to spread from the first as it was a different “type” of BC, so a completely different primary tumour. I’d have liked immed recon with the 2nd too, whilst having recon to the first at the same time. But to be honest, I was so flipped off at a second diag so soon, I just wanted the bleeping thing off to reduce any further risks of recurrence, so had a 2nd mast with full node clearance (standard procedure back then). Had the thought “I can always have delayed recon later”, as I knew I’d be unhappy without.
Please forgive my bluntness. I am in no way wishing to cause offence, am just being matter of fact". But there are two thoughts I have.
Firstly - Ref “hypertension is the key obstacle”? Why do you have high BP in the first place @JacquelineW ?? Is it mostly/totally related to your weight(??) as your mention of losing 4kg/8lbs doesn’t sound to be particularly excessive, or are you more overweight and that’s a suggested starter point to hopefully “help” lower your BP? Or is your high BP due to some other health factor that can’t be so easily addressed? and the Onco/surgeon’s weight concern is more with ref to physical aspects of the op? If the former, then obv, if you CAN address that to the degree of it lowering your BP, you’re in a better position to have the immed recon op you wish to have, aren’t you.
Secondly - Opting to “not” have a mastectomy is putting yourself at a great and grave risk of further spread (Metastasis) of your ALREADY diagnosed cancer to other areas of your body. You spoke of your worry of “cancer taking hold” - you already have it darlin, so it has already “taken a hold”. Hopefully? the Letrozole will reduce the tumour size and reduce the risk of it spreading/worsening “buying you some time”, hence your Onco/surgeon’s prescribing it. But none of us or Onco’s know if it has or hasn’t already spread elsewhere in your body, and, as was pointed out by @jules_n , scans/biopsies aren’t always accurate!
Is all very, very serious food for thought @JacquelineW . I wish you luck with your weightloss, decision ref mast and with your future procedures, lovey. Delly xXx
I have just sat for half an hour with my oncologist discussing future possibilities for treating my breast cancer. My breast cancer tumour is now in my medial canthus, mainly my eyelid and behind my nose, plus skin mets around my face and neck. This is Stage 4 metastasis, which started very soon after my primary treatment. My oncologist has been in discussion with the head of Ophthalmology who has ruled out surgery as too risky, two of his colleagues who specialise in radiotherapy which they have ruled out, and three different medical centres in the North that offer trials, none of which I qualify for. The fact is, oncologists work as teams and consult widely to determine the best treatment for each unique cancer, They don’t make any decisions lightly. I’m pretty certain someone in your team is ringing around to ask other hospitals what they would do in these circumstances.
I didn’t expect to get breast cancer, especially as I’d had a clear mammogram. Nor did I expect to get secondary breast cancer, especially so soon. My point is, if your treatment is delayed, these things are what can happen. You need to ask yourself if it’s really worth the risk. Losing a breast is no big deal, not when it means your life is prolonged considerably. It’s just a breast and, personally, I find it hard to understand why you would put body image (or maybe appearance) before safety and life. Trust me, Stage 4 is not where you want to be.
I’m happy embracing monoboobery. I have been unlucky that it has metastasised so the rest of my life will be spent on different kinds of chemo until they stop working. I did all the right things. I sought immediate help once I noticed a breast change. They found two tumours and 19 infected nodes. I had the full works. Yet still I’m here with this dreadful disease and a poor prognosis I ignore. You say you worry about cancer taking hold. It is very unpredictable (as I think my experience shows) and for that reason, you don’t mess with it. You trust your team to do their best for you. There’s been huge progress in recent years but if your team doesn’t think it’s safe, why would you not trust their judgment? They know from experience!
I do empathise with your situation but I find your conflicting feelings surprising. You can’t refuse treatment and yet worry about cancer spreading in your body. Of course it’s going to spread. Your thinking feels irrational to me. Of course, it’s your body and your decision but I think the responses you’ve had indicate that most women (and all of us have experienced or are experiencing the disease) would face the treatment rather than delay it. Most people want the cancer out as soon as possible.
I do hope you reach a decision quickly. Surgery may reveal different information, as mine did, and change the whole picture. I’m not trying to scare you - you’re probably scared enough at the diagnosis and what lies ahead - I’m just being realistic and speaking as someone who knows what breast cancer can do even when you’ve done all the right things. Talking to a nurse on the helpline above might be useful and help you rationalise the realities of your situation. They are wonderfully supportive and well-informed.